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Abstract

Introduction

The emotional burden associated with the diagnosis of cancer is sometimes overshadowed
by financial burden sustained by patient and the family. This is especially relevant
for a developing country as there is limited state support for cancer treatment. We
conducted this study to estimate the cost of cancer care for two major types of cancer
and to assess the perception of patients and families regarding the burden of the
cost for undergoing cancer treatment at a private tertiary care hospital.

Methods

This cross-sectional study was conducted at day care and radiotherapy unit of Aga
Khan University, Hospital (AKUH) Karachi, Pakistan. All adult patients with breast
and head & neck cancers diagnosed for 3 months or more were included. Data was collected
using a structured questionnaire and analysed using SPSS.

Results

Sixty seven patients were interviewed during the study period. The mean and median
monthly income of these patients was 996.4 USD and 562.5 USD respectively. Comparatively
the mean and median monthly cost of cancer care was 1093.13 USD and 946.42 USD respectively.
The cost of the treatment either fully or partially was borne by the family in most
cases (94%). The financial burden of cancer was perceived as significant by 28 (42%)
patients and unmanageable by 18 (27%) patients. This perceived level of burden was
associated significantly with average monthly income (p = <0.001).

Conclusion

Our study indicates that the financial burden of cancer care is substantial and can
be overwhelming. There is a desperate need for treatment support programs either by
the government or other welfare organisations to support individuals and families
who are already facing a difficult and challenging situation.

Keywords:

Cancer; Financial burden; Health care; Support program

Introduction

The diagnosis of cancer is shocking news for any individual and his/or her family.
Cancer is a chronic disease and the physical and emotional burden can sometimes be
overshadowed by the financial burden incurred by the family. In developed countries
and more affluent societies of the world, a large part of this burden is shared by
the state. But even so, studies from the developed countries like Canada
[1] have shown that patients and families experience significant burden despite several
state plans that are in place to address the issue. Wage losses due to cancer treatment
in working women with breast cancer adversely affect the barely manageable situation
and add to the financial burden sustained by the patient
[2]. Another study from the USA showed that financial burden can be substantial even
among women with comprehensive health insurance policies
[3]. Similarly, a study from Australia publicised that lost income, health service expenditures
and lost unpaid work were the greatest sources of economic burden among women with
breast cancer
[4].

In Pakistan, like many other developing countries, there is little assistance from
the government and in many cases the entire costs, including direct and indirect costs,
are borne by the patient and his or her family. To our knowledge there has been no
study conducted in Pakistan to address this important issue. There is also very limited
data from other developing countries facing a similar situation. Therefore, we conducted
this study to estimate the cost of cancer care for two major types of cancers at Aga
Khan University Hospital (AKUH). This is a private university hospital in Karachi
that offers comprehensive cancer care. We also assessed the perceived financial burden
of cancer care among patients and their care givers.

Methods

This cross-sectional study was conducted at Aga Khan University, Hospital (AKUH) Karachi
Pakistan from March 2009 to March 2010. All adult patients who had been diagnosed
with either breast or head & neck cancers for at least three months were included
in the study. Patients were enrolled from the Day-care chemotherapy and radiation
therapy units. Interviews were conducted from the patients and/or family members and
data was collected using a structured pre-tested questionnaire. Interviews were conducted
by a medical student after initial pilot testing. Questions included demographics,
family income, treatment costs, insight regarding the treatment and expectations of
the patients and families. Complete confidentiality of the information collected was
ensured. No personal data was collected by which the participants could be identified
afterwards. Written consent was taken from all participants. The study was approved
by the Aga Khan University’s Ethical Review committee.

Statistical analysis

Data was analysed using commercially available software package for social science
SPSS version 17. All costs were estimated as Rupees per month and later converted
into dollars for analysis. The conversion rate of 2009-2010 was used and applied to
other studies for comparison. Descriptive analysis was carried out for patients’ demographics
and clinical characteristics. Means with standard deviations were calculated for continuous variables and proportions were calculated for categorical variables.
Chi-square test was used for Univariate analysis for significance of categorical variables
in determining perceived level of burden and cost anticipation of the treatment. Logistic
regression was done for same categorical variables in multivariate analysis. The significance
level was set at 5%. Student’s t-test was applied for multiple values of test variables.

Results

In all, 67 patients were interviewed. Of these 44 (66%) were females and 23 (34%)
were males. The mean age of males and females was 42.6 and 46.8 years respectively.
The majority of the responders were from Karachi (79%). The distribution of the type
of cancer shows marked variation between genders as most females had breast cancer
(91%) and all males had head and neck cancer (100%). Overall 66 patients gave information
about their total monthly income. The mean and median monthly family income of these
patients was 996.4 USD and 562.5 USD respectively. Comparatively, the mean and median
monthly cost of cancer care was 1093.13 USD and 946.42 USD respectively. The patient
was the primary bread earner in 38.8% of the cases. The characteristics of the patients
are shown in Table
1.

Table 1.Characteristics of patients undergoing breast and head and neck cancer care at Aga
Khan University Hospital

The overall average duration of the treatment was 6.7 months, that for breast cancer
was 7.8 months and for head and neck cancer was 5.04 months. The cost of the treatment
was either fully or partially borne by the patient or the family in 94% of the cases.

Regarding cost anticipation, 20 (29.9%) patients confirmed that the costs were ‘more’
than anticipated or presumed, 29 (43.3%) responded that they were ‘much more’ than
anticipated while for 18 (26.9%) patients the costs were ‘not’ more than anticipated.
Less than half (44.8%) of the total patients (30 out of 67) informed that they were
aware of the cost at the start of the treatment. The association between cost awareness
and cost anticipation was statistically significant (p=0.01). The univariate and multivariate analyses for cost anticipation is shown in
Table
2.

The burden of cancer was perceived as significant by 28 (42%) patients and unmanageable
by 18 (27%) patients. Those who had monthly income less than 250 USD were more likely
to perceive the burden as significant or unmanageable (95%) as compared to those who
had monthly income more than 625 USD (37.5%) i.e. 95% of the people who had monthly
income less than 250 dollars (20 out of 21) perceive the cost of the treatment as
significant or unimaginable as opposed to 37.5% of responders (9 out of 24) who have
monthly income more than 625 USD. The details of the income groups and their perceived
level of burden are shown in Table
3.

Table 3.Perceived level of financial burden by income among patients undergoing breast and
head and neck cancer care at Aga Khan University Hospital

The association was not statistically significant between perceived level of burden
and the type of cancer (p=0.79), gender (p=0.26), average monthly cost of treatment (p=0.10) or the area of residence (p=0.75). However, the association was statistically significant with the monthly income
(p=<0.001). Also in multivariate analysis the monthly income was the only variable that
showed significant association with the perceived level of burden (p=0.009). The monthly cost of the treatment barely approached significance level (p=0.09). The detailed univariate and multivariate analysis for perceived level of burden
is shown in Table
4.

Table 4.Univariate and multivariate Analysis for Perceived level of burden

The monthly income and the monthly cost of treatment showed a trend towards association
but that was not statistically significant (p=0.072). Those who had monthly income less than 250 USD were more likely to have monthly
cost of treatment less than 750 USD (52.38%) as compared to those who had monthly
income more than 625 USD (16.67%) as shown in Table
5.

Table 5.Monthly cost of cancer care by income (p=0.072) and months into treatment (p=0.116)
among patients undergoing breast and head and neck cancer care at AKUH

The association between monthly cost of treatment and months into treatment was not
significant (p=0.116), although the mean monthly cost of treatment was much higher for those who
were less than 6 months into treatment as compared to those who were more than 9 months
into treatment (Table
5).

Percentages of different of types of costs are shown in Table
6. Hospitalization, surgery and investigations accounted for most of the costs with
mean and median percentage of 43.40 and 42.97 respectively. Doctor’s fee accounted
for a mean of 7.48% and median of 5.76% of the total cost of treatment. The cost of
chemotherapy and radiotherapy were quite variable and could be as high as 78.33% and
45.71% respectively in some cases. The total costs were underestimated in our study
by patients on account of on-going treatments.

Discussion

Though our study targeted a selected patients’ group from a single centre, yet it
points out that the stigma of the financial burden of the cancer care could be substantial
and overwhelming. The financial problems and social complexities could multiply the
stress and the sufferings associated with the disease itself and the toxicities of
the treatment manifolds.

The financial aspect of the disease is particularly sensitive in countries like Pakistan
where almost entire cost of the treatment is borne by the patient and the immediate
family with little or no support from state or health insurance policies. Hence, the
diagnosis of the cancer could be devastating news not only because of nature of the
disease but also because of the continuous financial drain posed by the costs of the
treatment.

According to IMF as of 2010
[5], Pakistan’s Gross domestic product (GDP) per capita stands at 1,067.971 US dollars
while Gross domestic product (GDP) based on purchasing power parity (PPP) per capita
stands at 2,713.272 US dollars. The average family income is 226.10USD/month but Pakistan
is a country of extremes. According to human development report 2008
[6], 60.3% of Pakistani population has daily income of 2 US dollars or less. However,
our study group represented a relatively more affluent section of the society with
a median family income of 996.4 USD per month. Despite this, the monthly cost of treatment
i.e.1093.13 USD, far exceeded the average monthly income of the entire ‘affluent’
family (996.4 USD). This could mean utilisation of savings and other means to bridge
the deficit. In the worst scenario, this might lead to falling in debt which had been
reported by 34.3% of the patients. It could be inferred from the above fact that some
people from underprivileged strata of the community might succumbed to the disease
without getting treatment due to the affordability issue. Nevertheless, this needs
to be documented from public sector before drawing a conclusion from the assumption.

Majority of the patients in our study (73%) reported that the costs were either more
or much more than anticipated and 55.2% of the study subjects stated that they were
not aware of the cost of treatment at outset. The cost of the treatment was underestimated
by mostly those people who were oblivious of the cost from the outset. This was again
not surprising as a cost related to cancer care is not a one-time expense in most
cases. This is different from a one-time expense like knee replacement etc.

In Pakistan, families still rely overwhelmingly on an income of single earning member.
This is usually the male member of the house. In our study all the patients with breast
cancers were females and majority of them were homemakers with little income of their
own. They were completely dependent on their families for the treatment expenses.
The situation was even worse for the male patients, as they were the bread earners
for their families in 91% of the cases. It gets almost impossible to sustain that
supporting position when cancer treatment is underway for the main earning member.
The emotional and physical toll could be even more difficult when the prognosis is
poor.

This is in contrast to the findings in the western countries where the hospital related
costs are mostly covered by the state or insurance policies. The financial burden
in the west is mostly associated with lost income etc. Therefore, studies from that
part of the world usually address the non-treatment related financial burden. A study
conducted in USA in privately insured women with breast cancer reported average monthly
financial burden of $1, 455
[3] but the GDP of USA based on purchasing power parity (PPP) per capita is 47,701.80
USD
[7]. Nevertheless,, a study carried out in USA showed that despite comprehensive health
insurance policies financial burden of breast cancer can be substantial
[3]. Another study carried out in Canada showed that despite the fact that treatment
and hospital related costs are paid by the public health care system, patients with
breast cancer face financial hardship and numerous other costs posing a significant
financial burden. The costs are especially worrisome when the financial means to cover
them are inadequate
[8]. It would be difficult to imagine the perceived financial burden if the entire treatment
costs are shifted onto the patient and family as is the case in Pakistan. The word
significant and substantial has been used in these studies from the literature but
percentage reporting this has been described in a different format which limited the
direct comparison between developing and developed countries. Also most of the studies
have addressed the out of pocket and indirect cost from patients’ perspective. The
cost figures from a similar study have been shown in Table
7. We could appreciate the comparable figures of mean cost of the treatment between
our study and study by Azorullah et al
[3] but there is a huge variation in the monthly income which could multiply the perceived
level of burden by many folds.

In most low income countries, people have to rely on themselves and do not necessarily
look out to the government for health care needs.

The cost of the treatment is of prime importance while making treatment decisions
and sometimes governs the choice of the treatment selected for a particular patient.
This was reflected in an interesting trend in our study where patients with low monthly
income had less monthly cost of treatment as compared to those with high monthly income.
Although this did not reach statistical significance, but physicians working in Pakistan
could appreciate this fact where many times a treatment is tailored to the financial
situation of the patient. Similar finding has been reported from a study in USA, which
showed that families with the lowest household income had least expenses. However
the proportion of household income spent on cancer care was higher for low income
families
[3].

The small sample size was a major limitation in our study. Many patients refused to
consent for disclosure of details regarding the income due to sensitivity of the issue.
Day care and radiotherapy unit of AKUH render its’ services to approximately 20 million
population of Karachi city
[9] and also receive referrals from all over the country. The patient group is diverse
comprising of all ages with different malignant disorders i.e. solid tumours and lymphomas.
We had targeted select types of cancers, thus, done a purposive sampling for the sake
of simplicity as this was the first study of its kind from Pakistan. The age and gender
distribution was a bit skewed for the very same reason. This has limited the generalisation
of the results, but this could be considered a pilot study with more comprehensive
studies to follow. Nevertheless, it has given an insight regarding the under-addressed
prevailing issue.

Conclusion

Our study indicated that the financial burden of cancer care was substantial and mostly
borne by the patient or the family. Most of the time, the monthly average cost of
the treatment far exceeded the monthly household income and a significant proportion
of patients perceived the financial burden as overwhelming. There should be financial
support programs on part of the government and other organisations to cover up for
the treatment costs of the cancer and to help these patients in managing the already
difficult and challenging situation.

Competing interests

The authors declare that they have no competing interests.

Authors’ contributions

AAZ conceived of the study, conducted the literature search, designed the study and
formulated the questionnaire and drafted the main manuscript. AK collected and entered
the data and did the initial analysis. TZA did the thorough analysis, applied statistical
tests of significance, edited and reviewed the entire manuscript. TZA also responded
to the reviewer’s comments and maintained the correspondence. All authors read and
approved the final manuscript.